Before leukemia, 4-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

“He was like a little school mascot,” said Luke’s mother, Lauren.

When Luke was diagnosed with leukemia at Monroe Regional Medical Center, the doctors there recommended UF Health Shands Children’s Hospital for his treatment. His family took their advice, and Luke was brought under the care of our pediatric oncology teams.

He was diagnosed with acute lymphoblastic leukemia (T-cell), receiving chemotherapy treatment since January 2016.

While the diagnosis is difficult, the Lamberts have experienced many positives since they learned of Luke’s illness.

“The most positive outcome has been the outpouring of love and support we’ve received,” Lauren said.

That love and support extends to the Lambert’s medical family, too.

“Our doctors are the best! We love Dr. Bill [Slayton]. He always takes the time to chat with us and makes Luke laugh. Luke has lots of favorite physician assistants, fellows and nurses,” she said.

Because UF Health Shands Children’s Hospital is part of the CMN Hospitals network, many of the patient programs, services, equipment and research projects are funded by donations to CMN. Invaluable programs like Child Life, which helps normalize hospital stays for young patients, specialized equipment like new pediatric infusion chairs and even renovated spaces especially for children all complement the care provided by medical teams.

“The level of care at UF Health Shands Children’s Hospital has meant a lot,” Lauren said. “Luke loves going to clinic to play with the toys and to see his favorite nurses and doctors.”

This time next year, the Lamberts look forward to fewer clinic visits and no more chemotherapy. Luke is in the maintenance phase of treatment, and his end-of-treatment date is schedule for June 2019 – just in time for Luke to play “mascot” again at his parents’ school.

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Dani-Lynnhttps://giving.ufhealth.org/2018/06/29/ambassador-highlight-meet-dani-lynn/
Fri, 29 Jun 2018 12:49:26 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=10639Like many families whose children are born with serious illness, the Early family vividly remembers the day their lives changed forever.

Dani-Lynn Early was born May 5, 2015. With big, blue eyes and a wide smile to match, she was immediately loved by her sisters, parents and friends. Only eight days later, however, those loved ones watched as baby Dani-Lynn was wheeled into surgery.

Dani-Lynn was born with congenital heart disease. She has three heart defects: hypoplastic left heart syndrome, a birth defect that affects normal blood flow through the heart; ventricular septal defect, a hole in the wall separating the two lower chambers of the heart; and partial anomalous pulmonary venous return, a condition where one or two of the heart’s veins return blood to the right atrium instead of the left.

After her initial surgery at 8 days old, Dani-Lynn spent five weeks in the hospital. After several difficult months and increasingly dangerous congestion, the Earlys brought their daughter to UF Health Shands Children’s Hospital.

“I took her into the E.R. and told them at check-in, ‘I have a heart baby, we are from Jacksonville, and she has been heavily congested for four months and her oxygen levels are low,’” Amelia said. “That was the day I was told by many medical staff, ‘Your daughter is a miracle and we can’t explain why she’s alive!’”

Dani-Lynn had already outgrown her first surgery by the time she was seven months old. Since her diagnosis, Dani-Lynn has undergone two open-heart surgeries and had many long stays in the hospital.

Now at age 3, Dani-Lynn continues her fight to thrive. She is on the heart transplant list as a level 2, which means she is stable and able to continue care at home. When she does come to UF Health, her care is managed by many across the pediatric cardiology team. She sees four therapists each week. From the congenital heart center staff to the Child Life volunteers who engage with Dani-Lynn and her sisters, each person has made a significant and lasting connection with the Earlys.

“The children’s hospital means so much to us,” Amelia said. “Child Life goes out of their way to make sure our other two daughters have toys and books while they are visiting their sister. Guest services checks in on us to make sure we have accommodations to stay local. And because of donations to CMN Hospitals, more research has gone into helping congenital heart disease children live a longer life.”

For now, Dani-Lynn’s life keeps busy between family and other activities. She is the Pure International Pageants “International Inspirational Princess” and looks forward to competing in more pageants and more playtime with her sisters.

“My daughters are playing with their baby sister. My heart warrior has a good fighting chance at living a long life!”

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Jennahttps://giving.ufhealth.org/2018/05/16/ambassador-highlight-meet-jenna/
Wed, 16 May 2018 19:14:12 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=1040318-year-old Jenna Rogers is a fitting example of how expert medical intervention at a young age makes all the difference in the world. When Jenna was younger, she was very tiny and sick often. She suffered from repetitive infections that required multiple hospital admissions and many at-home intravenous antibiotics.

Her infectious disease doctor in Orlando discovered that she had a problem with her immune system and referred her to UF Health Shands Children’s Hospital to see several specialists. After an appointment with an immunologist, Jenna also needed a rheumatologist. Fortunately, she was placed under the care of Melissa Elder, M.D., a pediatric rheumatologist who also focuses on immunology.

Jenna was diagnosed with common variable immune deficiency (CVID) and polyarticular juvenile idiopathic arthritis (JIA). CVID is a disorder that impairs the immune system, making those affected highly susceptible to recurrent infections and viruses in lungs, sinuses and ears. JIA is a type of arthritis where the immune system mistakenly attacks the body’s tissues.

Jenna now does weekly IgG subcutaneous infusions at home on her own. IgG is a blood product that is purified from the rest of the blood, eliminating potential infectious agents. She also receives monthly Remicade infusions, an immunosuppressive drug used to treat arthritis, takes nearly 30 oral medications daily, and is under the care of multiple specialists to manage her diseases.

“Without the level of care at UF Health Shands Children’s Hospital and the funds provided by CMN Hospitals, we literally would not have our daughter, our sweet girl,” said Jenna’s mother, Kristi. “CMN Hospitals provided funds for the transport vehicle that brought her to Gainesville, every single piece of diagnostic equipment and infusion pumps used for her medicine.”

Because of Jenna’s early medical intervention, she leads as full a life as she can tolerate with all of her illnesses. Her favorite activities include Girl Scouts, reading, playing Playstation 4 games with her friends and competitive archery. She loves spending a day at a Disney park with her favorite people—her family.

“The most positive outcome from Jenna’s circumstances is how our family’s relationship has grown even closer,” Kristi said.

Jenna’s biggest hero is her big brother, Jared.

“He brightens her darkest days and can make her smile when she feels the worst,” Kristi said. “They have a very special bond. Our family has been able to be together literally 24/7/365 for many years, and it is such a blessing.”

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Willahttps://giving.ufhealth.org/2018/03/29/ambassador-highlight-meet-willa/
Thu, 29 Mar 2018 19:08:05 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=10266If you have a chance to talk to 10-year-old Willa Ambrosius, she will tell you a lot about herself.

One, she wants to be a veterinarian and save all animals. Two, her favorite activities are singing in the school chorus, playing with her pets and playing ‘Let’s Dance’ on the Nintendo Wii. Three, she was diagnosed with Polyarticular Juvenile Idiopathic Arthritis when she was 18 months old, and arthritis is not just an “old people” disease.

When Willa had her first major flare-up, she had a hard time walking or playing. Her doctor at Nemours Children’s Specialty Care in Jacksonville referred her to Melissa Elder, M.D., Ph.D., a pediatric rheumatologist at UF Health Shands Children’s Hospital.

For Willa and her family, they have placed their complete trust in UF Health Shands Children’s Hospital.

“The level of care is exceptional,” Jessica said. “And the fact that there is state-of-the-art technology and plenty of activities in a fun environment truly help ease the anxiety of receiving an infusion.”

Willa’s diagnosis has influenced her day-to-day life by empowering her to be her own advocate.

“She has really come out of her shell. She will tell people about arthritis and how it affects her and other kids,” Jessica said.

More than eight years after her diagnosis, Willa is experiencing life like many children her age thanks to the treatment and care teams at UF Health. She receives infusions and undergoes physical therapy, while also taking injections at home.

She has attended Camp Boggy Creek, a camp where children with serious illnesses and their families experience the spirit and friendships that happen at camp. Her favorite memories are making friends at camp with kids who have a diagnosis just like her.

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Cadenhttps://giving.ufhealth.org/2018/02/27/ambassador-highlight-meet-caden/
Tue, 27 Feb 2018 18:22:25 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=101455-year-old Caden Buth loves singing, dancing and acting—but like a dinosaur or a robot. Any day spent having fun is how he would describe his best day, said Caden’s mom, Christina.

When Caden was 4 weeks old, he continued to bleed severely after a surgical procedure. His parents took him to their local emergency room near Tallahassee where the doctors began asking about bleeding disorders.

Caden was diagnosed with severe hemophilia A with inhibitors, which means his body’s ability to stop bleeding is inhibited. He receives all of his care and treatment from UF Health Shands Children’s Hospital, including factor replacement therapy, immune tolerance therapy for his inhibitor and immune suppression.

“The teams at UF Health are the most important resource for Caden’s diagnosis and bleed management,” Christina said. “They mean everything to my family and son’s care, and they always make Caden a priority. I don’t know where we would be without that. UF Health is invaluable and always puts the children first.”

While Caden’s parents try and keep him as bleed-free as possible, they find balance with his busy day-to-day activities as a 5 year old.

“We allow him to be a kid and understand that we can’t stop every bleed. He deserves to experience life as all kids do, and we try to live by this motto,” Christina said.

Caden’s resilience is matched by his boundless energy. He has had a few significant leg and knee bleeds, and even though he may be down for a while, he is back up and moving as soon as the healing begins.

“He doesn’t allow anything to keep him down and defeated,” Christina said. “He always finds a way through the bad with a smile on his face.”

For now, Caden and his family are adjusting to life with a newborn. They welcomed his baby sister to the family on December 29, 2017. Christina said they talk about plans and dreams, including what Caden wants to be when he grows up.

For The Kids Newsletter

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Abbyhttps://giving.ufhealth.org/2018/01/25/ambassador-highlight-meet-abby/
Thu, 25 Jan 2018 16:10:59 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=10038When patients are diagnosed with a chronic illness, they often become experts in their own care management and the details of their disease. Eight-year-old Abby Sapp is no exception.

Diagnosed with Type 1 diabetes on June 13, 2013, Abby doesn’t remember life before diabetes.

“It is a nonstop, unrelenting disease,” said Abby’s mom, Lacy. “Abby’s hour-to-hour life is influenced by her illness.”

Abby’s mom, Lacy, is a nurse practitioner. She had a suspicion Abby’s blood sugars were high and tested her urine for glucose the night before Abby’s official diagnosis. The next morning, Abby’s local pediatrician confirmed Lacy’s suspicions — her glucose was 477 milligrams per deciliter. A normal fasting blood sugar level is less than 100 mg/dL.

“We immediately came to UF Health, and fortunately Abby could be treated right away. As a parent and an ARNP, I knew our lives were forever changed,” Lacy said.

Abby wears an insulin pump and continuous glucose monitor at all times. Everything she eats is accounted for. She has to calculate the number of carbohydrates she eats and then, based on her actual blood sugar and with the help of an adult, calculates the amount of insulin she needs and administers it with supervision.

She checks her blood sugar 10 to 15 times daily. Her insulin pump infusion sites are changed every two to three days, and her continuous glucose monitor changed every week. Despite the constant intrusion from managing her diabetes, Abby remains positive, responsible and “ready to educate anyone about Type 1 diabetes,” Lacy said.

Abby loves music, dance, American Girl dolls and spending time with her friends. Her favorite subjects in school are art and recess, and she wants to be a singer/songwriter when she grows up. She is a triplet, with brothers Jacob and Andy sharing the same birthday. They also have a younger sister, Avery.

UF Health Shands Children’s Hospital has been an important part of Abby’s family, even before she and her siblings were born.

“They have served our family on a number of occasions from infertility treatment, amazing care of a triplet pregnancy with high risk, a NICU stay and now Abby’s journey in pediatric endocrinology. Our son Jacob was also treated extensively by the pediatric burn unit team,” Lacy said.

UF Health Shands Children’s Hospital means the “ultimate in pediatric care in Florida” to their family.

“Our family would like to thank all of those at UF Health who have taken care of us and our children at some of the most difficult times in our lives,” Lacy said.

“We would like families with children diagnosed with Type 1 diabetes and other chronic illnesses to know that our heart goes out to you, and that we are fighting together to raise our children to be as normal and healthy as they can be. On our hardest days, we stand faithful and grateful for life.”

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

For the first seven months of her life, Kinsey was a perfectly normal baby. When her arms and legs suddenly began to swell, her parents learned that Kinsey was in kidney failure.

Kinsey’s mom, Holly, said the family was devastated when they learned of their daughter’s diagnosis of atypical hemolytic uremic syndrome, or aHUS, and cardiomyopathy. Doctors originally gave Kinsey a life expectancy of less than a year and began experimental treatments.

Part of Kinsey’s treatment plan, which required her to stay in the hospital for more than three months, included a kidney transplant, which was made more difficult because her veins and arteries had blockages throughout. Thanks to doctors at UF Health Shands Children’s Hospital, the transplant surgery was successful.

Kinsey’s long recovery had some unique highlights – such as the decorations and presents that were placed in her hospital room by Child Life specialists on the one-year anniversary of her transplant.

At the time of her diagnosis the disease was fairly new. Holly said the disease is still very rare and they have a lot to learn, but a new medication has been introduced to help with aHUS. Kinsey currently receives this medication via infusion every three months.

Today, Kinsey is 14 years old and her parents consider her a miracle. Doctors agree that she has prevailed despite the tough statistics associated with her disease. Kinsey enjoys studying math, but mom says she does better in science. She also loves Disney, swimming, singing and dancing, her iPad and adult coloring books.

“We credit God for saving Kinsey’s life by using the doctors at UF Health Shands Children’s Hospital,” said Holly. “We know how he used all of the doctors and staff to keepher alive, and keep us close to home.”

Interested in becoming part of our CMN Ambassador family? Complete the form below and we will provide more information.

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

When Evangeline Owens was only 5 days old, she woke up with a low body temperature and in her mother’s arms. Evangeline and her family lived near Ann Arbor, Mich., at the time and she was rushed to the neonatal intensive care unit at C.S. Mott Children’s Hospital at the University of Michigan. She was hypoglycemic and hypothermic and started to show symptoms of jaundice, tremors and apnea.

There, Evangeline underwent a sleep study that showed severe central apnea, a condition that occurs when the brain does not send the proper signals to the muscles that control breathing. Following a two-week hospital stay, Evangeline and her family were discharged without any answers for her condition.

Over the next several months, Evangeline underwent a litany of tests that came back inconclusive. She experienced tremors in addition to extreme fatigue, sweating and other symptoms that went unexplained.

Wanting a change of scenery for their family, which includes nine other children, the Owens moved south to Gainesville in 2015.

“We had called Magnolia Parke Pediatricians in advance to arrange for Evangeline’s transfer of care,” said Evangeline’s mother, Kelly. “Dr. (Jaclyn) Otero did a massive amount of legwork to get the needed specialists on board with Evangeline’s care at UF Health Shands Children’s Hospital. We had a great first-time experience and immediately felt ‘at home.’”

Doctors continued to work to find a diagnosis to explain her condition. More genetic testing and lab work gave only some indication of glycogen storage disease, a disorder where glycogen is not processed properly within muscles and other organs. However, last year doctors gave a definite diagnosis of mitochondrial disease, an illness that occurs when structures that produce energy for a cell malfunction.

“We are monitoring every organ system as part of her care because it can affect her at any time,” Kelly said. “She is in PT and OT to keep her moving forward; she sees about nine specialists at UF Health Shands — we work very hard to manage her care and to make sure she has a good quality of life.”

Evangeline is now 2 years old and enjoys many things like trips to the park, visiting with her Mimi (grandmother), and playing with her siblings.

“The last two years since Evangeline was born have been the most challenging we have faced in our 20 years of raising 10 children,” Kelly said. “This has been an entire side of life I didn’t even know existed.”

The Owens have learned to ‘grieve the hard things while celebrating the little things, and to be thankful in the midst of it.’

“I am excited about the new opportunity (this experience) has brought into our lives — to be part of the CMN Hospitals family, meeting new friends and making a difference while giving back after all we have been given!” Kelly said.

Are you interested in becoming a CMN Ambassador family? Connect with us!

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

When Jack Murray was diagnosed with acute myeloid leukemia, or AML, at 11 years old, he and his family were focused on something much more important.

Jack is one of five children—the only boy. In May 2012, he was tested for mononucleosis. His bloodwork came back with a more serious diagnosis. He and his family traveled from Tallahassee to Gainesville that same day to see William Slayton, M.D., chief of pediatric hematology/oncology at UF Health Shands Children’s Hospital.

Jack and his family spent the first few days in a flurry of tests and meetings to define exactly what type and subtype of leukemia he had. They not only learned it was AML, but that it was also in his spinal fluid. He began four consecutive rounds of chemotherapy and would be at the children’s hospital for six months.

Because of the distance, Jack’s family became one divided from May through October, with one parent at home with his sisters and the other at the hospital. While hospitalized, Jack celebrated his 12th birthday in the game room on Unit 42 with pizza, friends, games and a cookie cake. However, these visits would become less frequent as he suffered the side effects and other illnesses that come with so much chemotherapy.

“Through it all, Jack was amazing,” his family said. “He defied the odds and we were able to bring him home for a few days in between some of his chemotherapy rounds. How grateful we were to all be together and know he was asleep in his own bed!”

Now, more than five years later, Jack is cancer-free and back to his favorite hobbies, including playing the guitar.

“We thank God every day for his remission,” his family said. “We also thank God for the amazing doctors, nurses, volunteers, social workers and everyone else who devotes so much of their lives to making it possible for kids like Jack to not only survive, but to have some comfort during that time.”

Jack’s family notes the difference CMN Hospitals makes in the level of care available to kids at UF Health Shands Children’s Hospital. From the best, brightest and most dedicated doctors and nurses, to the latest treatments and therapies, Jack and patients like him are able to receive the best possible care thanks to the support CMN Hospitals receives.

Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.

Before leukemia, 3-year-old Luke Lambert was a ‘care-free and fun wild child’ who loved to play with the students at the school where his parents taught.

]]>Ambassador Highlight: Meet Emily and Eliehttps://giving.ufhealth.org/2017/06/22/ambassador-highlight-meet-emily-and-elie/
Thu, 22 Jun 2017 19:01:30 +0000http://shands-giving.sites.medinfo.ufl.edu/?p=9539A hospital stay is not something a family wants to experience—let alone with multiple family members. Emily Chapman, 19, and her sister Elie, 10, were both patients at UF Health Shands Children’s Hospital. In 2015, Elie was hospitalized for a fourth time shortly after her sister was discharged after treatment for a serious injury. Now, they are thriving and sharing how Children’s Miracle Network Hospitals made a difference in their recoveries.

Elie and Emily Chapman

When Emily was a senior in high school, she suffered a serious spinal cord injury from a rollercoaster while at Grad Bash at Universal Studios. Her doctors told her family that it was due to repeated rides. She was left temporarily paralyzed from the neck down, unable to walk, write or use basic motor function. After eight days of hospitalization, she had a cervical anterior fusion of cervical spine 4-6.

Ultimately, she regained full function with the help of physicians and care teams UF Health Shands Children’s Hospital. She required occupational and physical therapy and was able to walk for graduation. She then continued her rehab at the UF Health Springhill Rehab center that summer in preparation for college in the fall.

In 2013, her younger sister Elie had a scary visit to the emergency room for dehydration, which led to a seizure. Tests revealed Elie needed treatment for glycogen storage disease, a rare childhood disorder that affects the liver’s storage and release of sugar and can lead to seizure or death. Elie drinks a protein supplement three times daily that keeps her healthy and growing. Although she has been hospitalized several times, she has not needed to stay overnight at UF Health Shands in the last two years.

“Elie sees endocrinologists regularly, and she has grown remarkably,” said Lisa, Emily and Elie’s mother.

Now, Emily and Elie are on a mission to share their stories. Emily was able to return to her job at Publix and will mark three years with the company this August. This month, Publix is celebrating 26 years of partnership with CMN through the annual Miracle Balloon campaign.

For Emily, she make sure to tell her customers about what CMN is and how it helps kids by funding research and equipment.

“CMN and Publix really helped me out when I was out of commission,” Emily said.

Lisa said she and her family love to chat with employees. She shares their story so employees know about the kids and families who truly benefit from their efforts.

“We are grateful for the support at Publix, especially from Customer Service Manager, Alana, who has served as a great support system for us,” Lisa said.

“It means a lot to our family that Publix has an annual CMN campaign,” Lisa said. “This shows that they truly do care about their customers.”

The Publix campaign runs through July 1. Stores in the Gainesville, Tallahassee and West Palm Beach areas are supporting UF Health Shands Children’s Hospital. For specific questions, reach out to Clare Scheller, CMN development coordinator, at SCHEC@shands.ufl.edu.

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Earlier this month, Dance Marathon at the University of Florida and Dance Marathon at Florida State University were honored with three awards at the Miracle Network Dance Marathon Leadership Conference.